On February 18th, 2011, our lives were changed forever when our son Christian Taylor Buchanan entered the world. He was born with a bilateral cleft palate and lip and almost completely blind. This blog is the story of his life, the joys we share, the challenges we encounter, and the amazing and trying journey ahead of our family!

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Christian Taylor Buchanan

Tuesday, December 6, 2011

Just The Way You Are - Caring for the Caregiver

Hearing that your child has a
disability is hard, but having to live day by day with a child or family member
who has a disability is probably one of the hardest things anyone will ever
have to do. It presents unique challenges, unwanted hardships, and daily
frustrations. A caregiver, such as a parent, can get discouraged and tired when
dealing with the struggles that come along with having a disabled family member.

I can attest to the difficulty. I
spent the first four months of my son’s life making 2 to 4 trips to Vanderbilt
per week, have spent his whole life fighting the Social Security office to get
him SSI, make weekly trips to physical therapy, and have watched him have
major, life-threatening surgery on more than one occasion. This is definitely
not what I expected or wanted when I found out that I would be a mother, and
this is the case with anyone who has a family member with a disability. No one
signs up for it, and yet, there they are, forced into a position unexpected,
unwanted, and uncontrollable. It is so easy to get burnt out or feel like you
are in over your head. Taking care of yourself when faced with such challenges
is vital not only to your health, but to the health of the person you are
taking care of.

Helpguide.org
has some valuable suggestions on how to prevent caregiver burn out and I would
like to share them with you. The first suggestion is to learn as much as you
can about the illness that the person you are caring for has. It will help you
feel empowered and confident that you are doing all that you can and caring for
them properly.

Secondly, know your limits. I know
that I struggle with this one. I want to be there for my son 24/7 and I feel
like no one else can care for him as well as me. I struggle to allow others to
do things for him. Realistically though, I can’t be there around the clock
because of work, school, and my other responsibilities, and also for my own
sanity. It helps me when I can step away for just a moment, let someone else
take care of Christian, and focus on what I need. Be honest with yourself and
realize where you need to draw the line. It will not benefit you or the person
you are caring for if you are physically worn out and emotionally exhausted.
Ask for help when you need it, and realize that asking for help doesn’t mean
that you are weak, incapable, or lazy.

Thirdly,
accept your feelings. Being thrown into the position of caregiver can bring
about some emotions that most people wouldn’t expect, such as anger,
resentment, guilt, and helplessness. Know that these feelings are not wrong. As
long as you don’t compromise the well being of the care receiver, allow yourself
to deal with your feelings. The fourth suggestion follows right along. Talk
with someone you trust, find ways to cope with your feelings in a healthy
manner. Do not bottle them up and repress them. There are also caregiver
supports groups that you can get involved in, but counselors and therapists are
a good option too.

And to
all those who read this who are not care givers, I hope that you can understand
the immense pressure that is put on a care giver. If you know someone who is a
care giver and you would like to help care for them, there a multitude of
things you can do. Offer to sit with their family member for the evening so
they can go to dinner. If that is unrealistic under their circumstances, then
send them a card, visit them, or bring them lunch. Sit and talk with them, let
them vent their frustrations without casting judgment. Let them know that someone
cares about them and that they are doing a great job.

I would
also like to share with you some resources that you may be able to tap into to
help you be the best caregiver that you can. The Upper Cumberland Human
Resources Agency (UCHRA) has a wealth of resources that I urge you to look in
to. Cannon County offers a transportation program that is available to anyone,
but the elderly and the disabled get first priority. If you are struggling to
afford the gas to take your family member to doctor’s appointments or wherever
they need to go, this is a great resource. There is also an Energy Assistance Program
that will help with utility bills for low income families and Cannon County
also offers a Commodity Program which essentially gives free food to low income
families. You may have an elderly family member on a fixed income who could use
this, or might be able to use this yourself if the strain of caring for a
disabled family member has left your resources stretched thin.

Mr.
Larry Davis, the coordinator for the Cannon County UCHRA suggests that if you
are planning on tapping into any of these resources, give their office at least
2 days notice if possible. The resources they have to dispense can change
quickly, so to ensure that you get the help that you need, please call ahead of
time. The Cannon County UCHRA office is located at 301 West Main Street, inside
of the Adams Memorial Library, Room 302, in Woodbury.You can reach their office at 615-563-2916 or
e-mail Mr. Davis at ldavis@uchra.com

I hope
you have found some useful information that will help you on your journey of
care giving. If you have any ideas, comments, or questions, please e-mail me at
laceybuchanan@gmail.com.

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About Me

I am a Christian, mother, wife, daughter, aunt, sister, and friend to some amazing people. I am a student at Nashville School of Law. I work at a daycare. I am passionate about disability advocacy and education.